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"Kaiser's decision denying this man a transplant is not based on good medicine or sound science, and it may cost him his life."

September 22, 2003

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(Denver, Monday, Sept. 22, 2003) - Saying that one of the nation’s largest HMOs may cost a Denver man his life by refusing to cover a kidney transplant because he has HIV, Lambda Legal today filed a formal appeal with Kaiser Permanente and asked the HMO to reverse its denial in light of a range of scientific data and the man’s personal health history and experience.

“To deny our client the care he needs, Kaiser is ignoring published reports on organ transplants for HIV and not looking at its patient’s individual health status,” said Hayley Gorenberg, AIDS Project Director at Lambda Legal. “In the last seven years since the advent of better treatments for people with HIV, the medical community nationwide has learned a great deal about organ transplants. Kaiser’s decision denying this man’s transplant is not based on good medicine or sound science, and it may cost him his life.”

John Carl, a 53-year-old resident of the Denver area, began experiencing kidney failure in the fall of 2001 and receives dialysis three times per week. This summer, he requested coverage for a kidney transplant, but Kaiser denied his request in late July, saying, “[k]idney transplantation for HIV-positive patients is contraindicated … due to its experimental status and non-favorable outcomes.”

In today’s appeal, Lambda Legal said Kaiser’s justification is simply untrue. “It’s flat-out wrong that kidney transplants for people with HIV are experimental and have unfavorable outcomes,” Gorenberg said. “There’s a solid and growing body of scientific and medical evidence that clearly shows HIV does not significantly affect the outcome of kidney transplantation.”

Lambda Legal also said in the appeal letter that it’s “particularly troubling” that Kaiser’s Colorado office rejected Carl’s transplant request because Kaiser’s Southern California office evidently is willing to cover transplants for people with HIV. “We hope that Kaiser’s Colorado region will reach the same well-founded and medically supported conclusion as the committee in California,” Lambda Legal said in the appeal.

Lambda Legal cited many examples of this data in its appeal letter today, including a 2002 New England Journal of Medicine article on the subject that found “no evidence of poorer survival among otherwise healthy HIV-positive patients who are receiving anti-retroviral therapy,” which Gorenberg said is precisely Carl’s situation. The article went on to say that “transplantation in HIV-positive patients should … not be considered experimental,” and it further supported reimbursement for the patients.

Carl is in a program called M+C, or Medicare plus Choice, in which Medicare pays his enrollment in Kaiser Permanente HMO. Part of the arrangement requires Kaiser to follow Medicare guidelines for coverage. Under Medicare guidelines, Kaiser must cover the costs of any treatment that is “reasonable and necessary for the diagnosis or treatment of illness or injury or to improve the functioning of a malformed body member.”

“When you put together all of the medical research, this patient’s health status, and the federal Medicare guidelines Kaiser is required to follow, there’s no question that this transplant should be granted as quickly as possible,” Gorenberg said. Underscoring the importance of Kaiser’s decision, Lambda Legal’s appeal letter today said, “Continued delays that may result from Kaiser’s denial of coverage for a transplant may cost Mr. Carl his life.” Carl has already been accepted by the United Network for Organ Sharing’s national list, waiting for a suitable kidney. In 1992 the United Network for Organ Sharing, a national clearinghouse for patients waiting for organs and organs available for transplantation, issued a statement on patients with HIV, which said, "[a] potential candidate for organ transplantation whose test for HIV-Ab is positive but who is in an asymptomatic state should not necessarily be excluded from candidacy for organ transplantation."

Carl, who has had HIV for 15 years, has an undetectable viral load and has not recently suffered any opportunistic infections. "I’ve been surviving well with HIV for a long time, but if I can’t get coverage for a kidney transplant, that may not matter,” Carl said. “I’m fighting for my life and for my quality of life - and hopefully so that other people in similar situations won’t have to face this.”

According to Lambda Legal, people with HIV are still sometimes blocked from being considered for transplants, even though medical and scientific evidence makes it clear that they should be evaluated on a case-by-case basis like any other transplant candidates.

Hayley Gorenberg, Director of Lambda's AIDS Project is handling the case. She is joined by Eric Maxfield with The Legal Center for People with Disabilities and Older People based in Denver.